Genetic Breakthrough Offers Promise for ME, Fibromyalgia

Many things are known to trigger Myalgic Encephalomyelitis and Fibromyalgia, including bacterial infections, viral infections, fungal infections, parasitic infections, chemical exposure, surgery, and stressful events such as an automobile accident. That is quite a few triggers, and as you can imagine, based on this, almost everyone in the world should have one of these diseases. But they don’t.

Why is it that some people get Fibromyalgia or Myalgic Encephalomyelitis when the vast majority of people do not? And why, after decades of research, haven’t medical researchers discovered what these diseases are, what causes them, and why they generally last for life?

I believe we are on the eve of learning that ME and Fibromyalgia are caused by damaged DNA. Not the DNA that comprises our genes, but the DNA in our cells that controls the genes - the ‘epigenetic regions’ of the chromosomes, which is the DNA directly above and below each of our 21,000 genes. Until just recently, science has lacked the tools to understand these ‘epigenes’ and how they - and not the genes - may be responsible for countless diseases including Fibromyalgia and ME.

While our 21,000 genes take up space on our DNA chromosomes, the fact is that 98% of our genetic material is in fact not composed of genes - it is composed of what scientists had previously called ‘junk DNA’. They called it ‘junk’ because they did not know it had any biological function. The average length of the DNA in each of our cells is six feet. Of that, the genes take up slightly less than two inches. This incredible length offers plenty of opportunity for damage and consequential gene dysfunction.

Scientists have now learned that epigenetic DNA is actually the ‘software’ that completely controls our genes, which are the ‘hardware’. It turns out that epigenes consist of some 5 million ‘switches’ that control genetic expression, and that inappropriate switching results in genetic and biological dysfunction.

The study of this ‘junk’ DNA is called epigenetics, and it is the hottest thing in the science of genetics since the discovery of genes themselves.

This is exciting for patients, because if the mechanism that controls the genes isn’t functioning correctly, an organism cannot live the way it was designed to live, and a permanent disequilibrium can take place in the form of a chronic disease such as Fibromyalgia or ME. Patients have so many physical abnormalities that it is not difficult to see that something as complex and far reaching as malfunctioning genes could be at the heart of the pathogenesis of FM and ME, and possibly other neurogenic / immunogenic diseases such as Autism, Gulf War Syndrome, Multiple Chemical Sensitivities, and others.

As we now know, having our genes turn on and off at exactly the right times is a big deal when it comes to how our bodies handle everything from pathogens to stresses of life. If an organism doesn’t have an appropriate immune response to a pathogen or some other stressor because of faulty gene expression, the organism could die, malfunction, or suffer from a chronic disease.

Several leading ME researchers are turning their attention to epigenetics, and I believe it is here that we will find the answers to the mysteries of ME, Fibromyalgia, and other neuro-immune diseases. Research in this area has already started, and numerous gene function abnormalities have already been discovered in ME.

If I may offer an optimistic perspective on the miserable way the government and medical world has perceived and scientifically pursued ME and Fibromyalgia, consider this: It is possible that medical science has not had the knowledge or tools necessary to even begin to understand how and why these diseases exist until just the last few years, because the answer could only be found in something they’d never imagined - our damaged genetic software: our ‘junk DNA.’

If this is the case, the answers could not have been found until now, because the tools that researchers had in their arsenal were too crude and primitive to delve into the complexities of the genetic malfunctions that may cause ME and Fibromyalgia.

It may be that only now, with the powerful new technology driving the science called epigenetics (and its sister science, proteomics, which measures the activity of genes), that we can finally begin to understand what Fibromyalgia and ME are, why they exist, and how they can be treated and cured.

I believe this new science will lead to a cure for ME, Fibromyalgia, and many other diseases including many cancers. Control the genes, and you control the body.

Take a moment to learn more about epigenetics and the potential it may offer ME, Fibromyalgia, Chronic Lyme disease, Autism, and a host of other neuro-immune diseases. A great place to start is with the articles and videos below.

What is your opinion? Please let me and others know what you think about epigenetics’ potential to solve Myalgic Encephalomyelitis and Fibromyalgia.

Dr Klinghardt is on record as stating that more than 80% of people with ME/CFS actually have
the parasite C. pulmoni, also named Klapowi. Between one and four million people in the US
have been dx with ME/CFS which means that millions and millions of people actually have this
parasite. This parasite has the very same symptoms as ME/CFS so figure it out!

This parasite is not contagious. It is acquired via food and drink. It was thought to have jumped
from animal to human in Viet Nam when the US bombed the hell out of Viet Nam. It came back
to the US via returning vets. This explains why every last person does not have this parasite.
It has nothing whatsoever to do with genetics. There are a lot of researchers collecting a lot of money, going down a lot wrong roads. As long as they get paid i guess they are not concerned
with the truth of the matter, or the millions of people who are sick with this parasite.

I agree with the author of this article: epigenetics most likely IS the unsolved mystery beneath viruses, parasites, and chronic disease of all types. Why do some become permanently ill and others not? The "parasite" comment/post does not explain anything to me! As a sufferer of CFS/ME since 1990 (that's a long time, folks!) I've tried every treatment + remedy I could afford over the years, and have seen some amazing, brilliant doctors on the West and East coasts. Still not cured! Epigenetics is exciting in that it may unlock the mystery of why we can't get well.

I also think CFS/ME patients should be tested for ALL parasites, including c. Pulmoni and blastocystis hominis. However, I believe these infections crop up because we have more serious underlying problems, not the other way around. I haven't been treated for c. Pulmoni because it doesn't show up in lab tests or bloodwork, but I may ask my world-famous CFS doctor to test me again, just to be sure.

There is no such thing as a good test for these parasites. This is 'hidden lung worm',
inside biofilm, also known as protozoal. This is living slime. It protects the worm from
the immune system. It acts as a guard dog, spewing out toxins when it is threatened.

Skip over the worthless tests and start taking ultraviolet light blood treatment and/or
vit c IV and the dead worms will start popping out your chest area. They are the size of
a grain of sand. You will also see lots of protein foam in your urine. The larvae is in
a sheath and can remain protected for up to 80 days so it is not easy to get rid of this
parasite.

Doctors typically think parasites reside in the gut. Only 30 percent reside in the gut.
The other 70 percent are in other parts of the body and there is no reliable test to
locate them.

Rich, would you mind explaining more fully exactly how the discovery of the gene switches may benefit people with ME or FM? When the scientists talk about targeting the switches instead of the genes, targeting with what? to what purpose?
I don't think anyone has discovered "the one right answer" and I think any promising avenue should be explored. I just want to know more about the exact process by which we might be helped.
thanks

Epigenetics basically says that things in the environment (everything else except the genetics) can turn genes on or off ("expression" means "on"), or increase or decrease their activity ("upregulation or downregulation"). Since in CFS/ME, some people seem to recover and others do not and either get worse or stay sick, it does not seem to be a genetic illness. Usually genetic illnesses get worse over time as some wrong product builds up in the body, or some missing product impacts the body.

But if there were an on/off switch for the genes that do something, that would explain why they switch one way when we get sick, and the other way when we recover. It would also explain why people with the same genes might not get sick. And this would explain people who do not recover. They have not found the right epigenetic switch, or have not been able to access (it could be blocked) or activate it.

This would also be another reason why people with CFS/ME look normal on most tests (besides using the wrong tests and looking in the wrong places). They function normally until something switches. This means that they can function normally again if it switches back. This might also explain relapses. Perhaps the switch goes back to the setting that causes CFS/ME symptoms.

I am taking the leap of trying TA65. No, I cannot afford it, but I decided it was worth a try, having reached the conclusion that damaged DNA may be part of the equation. I realize this is controversial, and is a very personal decision. Has anyone else tried it?

As you know, most of us long-time sufferers, who have taken the time to do a lot of research, have come to the same conclusions you outlined in your article. We just haven't said it so eloquently as you.

Example of off/on switch: The first night of my first peptide injection, my eyes watered and I started to drool. Anyone who knows about Sjogren's knows that this is a miracle. My doc explained that the peptides allowed my genes to turn the switch back on to allow my salivary and oil glands to make tears and saliva. How this works is still a mystery to me but that it works is, as I said, a miracle. I don't think the peptide therapy is a cure but I think it works hand in hand with this genetic research.

There will always be people who are convinced that one of the triggers of our illnesses is "the cause" of them. Even researchers are prone to this faulty thinking. There is a difference between a relationship and a cause. If someone's FMS is triggered by an auto accident, she may believe auto accidents are "the cause" of FMS. If a parasite triggers someone's CFIDS/ME, he may think that is "the cause" of CFIDS/ME. The much more likely scenario is a genetic disposition to these illnesses.

Mikie

MOunting evidence

Posted by: IanHOct 25, 2012

There is plenty of logic telling us that epigenetics is involved in the etiology of ME/CFS and there is mounting evidence as researchers turn their attention to this disease to investigate epigenetic systems

DNA methylation and de-methylation (the main switch being referred to)has its faults and some of the causes of these "faults" are being uncovered.

Remember that epigenetic mechanisms are the link between genes ie. (protein synthesis) and the organisms requirements and the environment. In simple terms the environment has some control over our gene expression (so that we can adapt).

One of the key purposes epigenetics is to control endogenous (or latent) viruses of which there are many. In particular the herpes group, which have been implicated in ME/CFS for along time. I would say that everyone with serious ME has activated herpes viruses, eg. HHV6, HHV7 and CMV as well as others. Some studies have shown how these are present and some studies have shown how when these viruses are removed COMPLETELY using antivirals appropriate to the virus the symptoms of ME disappear. Keeping the viruses away is another matter. Our system can't keep them away so it keeps them under epigenetic control (silenced). When this mechanism goes wrong they become active in a form different to the original infection. Once this happens our immune defense goes awry and causes all the bio markers we have so far identified and there are many. In addition the immune cytokines out of order such as TNF gamma damage our mitochondrial membranes and this leads to merry hell.

I could go on but not here. There are a few papers kicking around. I am currently reading Epigenetics by Allis, Jenuwein, Reinberg and Caparros. This book, although a major text has some sections which make a strong case for epigenetic causes of the so-called auto-immune diseases.

Also see:
Epigenetic dyregulation of Epstein Barr Virus and the development of auto-immune disease.
http://www.ncbi.nlm.nih.gov/pubmed/21627044

While I have no answers for the epigenetic causes. I know one thing you can do to prevent further damage and possibly assist your own system to recover.

TAKE 10,000 IU Vitamin D everyday unless you get lots of Sunshine in the middle of the day, which most people have been avoiding for about 50 years now. So if you can't get the sun take the supplement. It is sooooooo important.

The other you can do is to ensure you include in your diet foods which support methylation such as NAC, vitamin B12 and folate. (Read RichVanK's work on the methylation cycle block).

And, it could take years for the above to have its effect. You will not feel better over night.

Parasites: which credible doctors/researchers believes this theory?

Posted by: richcarsonOct 25, 2012

The parasite theory as a cause of ME or FM is fascinating. Can anybody send me at least two links to legitimate research that backs this up? I am not familiar with the theory that parasites are the LIKLEY cause of ME of Fibromyalgia. Thanks, Rich

Sept 2011, Dr Larry Klapow presented the parasite/worm to International Association of ME/CFS. His presentation is on page 176 of the 2011 bulletin. Dr Klapow patented this worm/test/treatment approx 1997. Changed worm name to Klapowi. Google Klinghardt, Mercola interview !!. The C. pulmoni/Klapowi worm/parasite is in the nematodes group. There are hundreds of links on the internet. Google any combo of CFS, Klapowi nematodes worm parasite Klapow -- and follow the leads. This is not new information.

Barbara Lochner

What is a patients best friend?

Posted by: richcarsonOct 25, 2012

Progress in medical technology occurs at about the same rate as progress in computer and information technology--FAST! More importantly, it is occurring exponentially—where information builds on information, and findings are made faster and faster and faster. Think 'Moore’s Law' here and you're close. This is the nature of technology, and this exponentially of progress is the most exciting aspect of medical knowledge and treatment potential.

Remember how long it was supposed to take to map the human genome? It took but a mere fraction of the time. That’s because progress can happen so fast that even guessing timelines in the 5-10 horizon can become a crapshoot. Plus progress is not linear—it occurs in in fits and starts. You never know when the next breakthrough is going to burst upon the scene. They happen irregularly, and when they occur, the game can change quickly.

Growth is not linear. It is exponential. Patients have no greater friend than that simple fact. A predictably unpredictable breakthrough could occur anytime--just think rituximab and the promise that offers for ME. This is the technological era, and this is the greatest gift that patients have.

The fact is that there has never before in the history of the world been a better time to have ME or Fibromyalgia than today, because growth in medical technology has put us on the verge of understanding and treating (and curing) these diseases and others. The writing is on the wall for ME and fibromyalgia, and we just have to have patience to wait it out.

I am amazed that people could positively rate a post which says the ME/CFS is caused by parasites. There is no evidence that ME/CFS is infectious. Any epidemiologist will tell you that the requirements for infectious disease are not met in ME/CFS. While there are families with it that does not mean it is transferable by pathogen. It suggests that the risk factors are heritable.

Where is the data that tells you that parasites is the cause of ME? I can't find it from any of the journals I read.

I can't believe someone could claim CFS/ME is _not_ infectious, considering how much evidence there is for that, including many epidemics (some people believe the epidemics don't prove infectious origin and that it could be something like chemical exposure, but if you read all the scientific articles written about them, it is completely clear this is an infectious disease).

However, this doesn't mean CFS/ME is caused by parasites, of course. So far there is no evidence for that and plenty of evidence suggesting it is not caused by parasites.

Sept 2011, Dr Larry Klapow made Klapowi worm presentation to the International Asso of ME/CFS. His presentation is on page 176 of the 2011 bulletin. Approx 1997 Dr Klapow rec'd patent on c pulmoni worm & treatment & test and changed name to Klapowi.

This is hidden lung worm. There is not a productive test on this planet that will prove that this worm is where it is. Why would science devise a test to find the worm when they don't know that the worm exists? However, if you suspect you have it then you should start ultraviolet light blood treatment combined with vit c IV. Dead worms, the size of a grain of sand, will begin to exit your chest. You will also notice protein foam in your urine.

There is a lot of info re this worm - a nematode - on the internet. Google it with CFS, etc. and look at all the leads.

This last week NY Times reviewed a book by a scientist re parasites jumping from animals to humans. It is all around us and has been for years. Medical science is and has been asleep at the wheel. And they will remain so as long as they are being paid off by the pharmas.

Genetics, DNA & Sam-e

Posted by: WolverineOct 29, 2012

Hi all. I am one of the most severe cases any one has seen. The last year ive spent in and out of hospital fighting for my life. I can barely get off the bed, and travelling 5 minutes in a car makes me feel like my circulation will collapse. Its due to multiple factors including cortisone damage and a severe worsening of my immune system over the last few years - constant viruses & infections of all sorts.

Anyway, point here is that this could make a lot of sense due to the fact that Sam-e LITERALLY saves my life. Its one thing I NEED to take, even though very small doses every 2nd or 3rd day. It literally 'opens up the flood gates' of what feels like thousands of tiny functions through my body. Sam-e is involved in hundreds of processes in the body INCLUDING DNA REPAIR! Therefore perhaps it helps this genetic/dna dysfunction going on. A few days without it and my systems lock up.

Clusters is not evidence of ME infection but that an infection triggered ME symptoms in some people. The agent itself being not the cause of ME.

Both Dr. Petersen and Dr. Kogelnik think that this is the explanation of clusters.

Infection? Epigenetics

Posted by: IanHNov 2, 2012

What evidence is there, that ME is infectious?

Clusters is not evidence of ME infection but that an infection triggered ME symptoms in some people. The agent itself being not the cause of ME.

Both Dr. Petersen and Dr. Kogelnik think that this is the explanation of clusters.

I believe the evidence actually points to epigenetic cause in combination with vitamin D deficiency which is rampant in higher latitudes. ME is also primarily a higher latitude illness and seems to be increasing in the middle east because of covering up from the sun. Like MS this illness will be improved or prevented by high dose, long term vitamin D therapy. In particular the normalization of maternal vitamin D levels to ensure children are born with high levels of vitamin D. High levels of vitamin D also help to ensure high levels of glutathione and lower levels of oxidative stress, the causes of which are many.

Here is a fascinating fact that underlines the relative size size difference of human genes and the epigenitics that control them: the length of the DNA in every cell our our body (except for red blood cells) is about six feet long if it were unrolled. The length of the genes comprises only about two inches of that six feet.

That is plenty of room to see genetic changes and genetic damage in people who develop ME and Fibromyalgia. This is the Achilles heel of the cell, and toxins, chemicals, stress, and radiation are the poisons.

I would add to Rich's information. The best place to look for markers of ME is in the epigenetic system. ME will be a disease which is triggered by changes to genes. These changes are initiated through the epigenetic control by the environment, either pathogens or toxins. This can also be an explanation of the incidence in families. While the familial incidence is not supporting inherited genetic polymorphism very well it does support induced genetic change which itself can be heritable for one, two or three generations.

Other diseases which are eluding the discovery of cause will find markers in the genetic control systems is auto-immune diseases and some cancers such as bowel cancer. These are also diseases related to vitamin D.

I previously posted that I am trying TA65. I asked if anyone else is trying it; no responses. Hello.. is anyone else out there trying it? It has been making me much sleepier than usual. It is supposed to
fix the damaged DNA. I know my immune cells are few in number and incompetent. It is supposed
to fix the damaged DNA and correct that. If anyone else is trying it, please share your experience.

Out of interest. Which of your immune "cells" are fewer in number? And what are their levels? and normal range for you?

TA-65

Posted by: IanHNov 5, 2012

The issue in epigenetics is not damage to DNA but interference with the methylation of histones, (control proteins). The DNA itself may not be damaged at all.

TA-65 is a telomere protector in particular rats and mice cell lines (haploinsufficient mouse embryonic fibroblasts (MEFs) that have very short telomeres and a single copy of the telomerase RNA Terc gene so that the TA-65 + telomerase increases/rebuilds the short telomeres which improves DNA repair.

So there is no evidence (yet?) that TA-65 and telomere length has much to do with transcription/translation. I don't know of any evidence that PWME's have shorter or more damaged DNA as such.

However taking it sounds worthwile for aging.

TA 65 Ian

Posted by: CatttttttNov 12, 2012

I do not have a methylation problem. (If I am understanding you correctly). I've been taking all the supplements in the protocol for that for many years. Have been tested since that time and I do not have that problem. If I'm not understanding you correctly, please let me know.

TA65

Posted by: CatttttttNov 12, 2012

I answered you Ian H, but it came up out of order.. Please scroll down. Ian, do you work in healthcare? What is your background.?

mitochondrial DNA

Posted by: LevakNov 7, 2012

I'm glad they are studying DNA, but imagine this is nuclear DNA. I have mitochondrial disfunction, & think a lot of other people with CFS do too. Mitochondria provide energy to the cells. I'd like to see some studies done on mitochondrial DNA to try to figure out what is going on with us.

in the 90s, my white blood cell count was zero. It was repeated several times and it was still zero.
Eventually, I did an experimental treatment of Il2, TNF, GMCSF, by immunocomp labs in Stockbridge Ga, who are now out of business, because the wonderful doc there passed away. They tested my blood every month for several T cells, B cells; the competancy of the cells I had. The cells were few in number and very incompetent. I had a fire in July and live in temporary housing so my file is not readily available to tell you numbers, although I do have it. The treatment worked, until it was discontinued (due to the doc's death), and time passed. I've written about this before over the years. (Sick since 1989). Hope that answers your question.

I have been taking 2 Ta65s a day, and am actually feeling weaker lately. Perhaps I should cut back to one. We all are very sensitive to medication doses.

Personally, I still think there may be a hidden virus involved in Fibromyalgia/ME. Perhaps one that can pass from mother to offspring. Whatever the cause (and lets be honest, nobody yet knows the truth however adamant they might be about a particular theory, because without a biological, validated test, we cannot know for certain that we are all actually suffering from the same disease), epigenetics may well help in pinpointing the root of the disease and any tool we can possibly gain in our search, should be rigorously utilised.
So, whilst I am not yet quite so enthusiastic as Rich Carson at the prospect of a speedy breakthrough from this latest add-on to our genetic knowledge, I feel confident that we are at last heading in the right direction. And hopefully, the psychologists have an ever diminishing platform for their pet, self-justifying platitudes!
However, past experience tells me not to build hope up to too high a level, because such hopes, if dashed, can be emotionally devastating, almost beyond enduring. Best not to expect too much, that way you cannot be dissapointed, but might be pleasantly surprised! Progress can indeed be slow, because any breakthrough whether diagnostic, or etiological discovery leading to treatments, has first, to undergo several independent trials to prove it. Secondly, it takes 18 months to 2 years (last I heard - from a research proffesional) for ratification. Until such time, the breakthrough cannot be applied.
Also, although President Obama's support may prove a galvanising factor in moving opinion and facilitating potential positive action, please do not assume this automatically translates directly or indirectly, to a floodgate opening of massive new research funding.
What really amazes me though, in the case of Fibromyalgia, is why there is not already a fully ratified biological, diagnostic test. Surely it would only require a tiny muscle biopsy compared under microscope with magnified graphic image/s of normal muscle to see glaringly obvious difference in structural condition? My muscles are crunchy, gritty and achy to a degree that I would expect the difference to a healthy control to be much like that between washed fabric with conditioner and washed fabric minus conditioner, when visually compared under microscope (we have all seen the stark comparison on tv!).
Can anyone tell me why this is not, or cannot be done? It would be much more accurate and reliable than continuing to rely on the subjective "tender points", clinical diagnosis as at present.